Posted in Fibromyalgia, life lessons

If I Could Go Back | How I’d Survive College With My Fibromyalgia

First things first – my fibro isn’t your fibro or anyone else’s fibro.  Mine is unique to me, much like anyone else’s is unique to them.  When it comes to functioning, I am at about 30%.  Some people do better than me and some do worse.  I do not intend this piece to be advice for everyone with fibro. This is simply how I, one individual with my own unique set of fibro symptoms, would have done things differently.

And secondly, I do believe adversity molds us into beautiful things and therefore should not be avoided. However, needless suffering is exactly that – needless.

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I dropped out of college in the winter of my sophmore year.  I had transferred from a prominent university to one of the state universities because I was worried about the cost.  Strangely enough, the cost still managed to do me in as my first university didn’t process the paperwork correctly and left me with all of my tuition due and no transcripts to hand over to the college I had already been attending for half of a year.

Yes, this really happened.

I was in bad shape.  The stress from attending classes I wasn’t supposed to be in yet because my former college didn’t send over the transcripts yet was getting to me.  Having to tell the professors over and over again why I was there was humiliating to say the least.  Worst of all was that I was looking at taking finals for classes in which I was not registered, and no one could seem to promise me that my efforts would be rewarded by being officially documented… so, I quit.  Just like that.

To be fair, I left because of the money and transcripts issue but I had been struggling well before that.  College, it turns out, is much different than highschool.  Much more energy is needed just to get to your classes, if you can find them, nevermind the financial burden of your books and food.  Add a full schedule plus a part time job, and even the healthiest people may falter.

But I wasn’t healthy.  I suffered infection after infection, and when there wasn’t an actual infection it still felt like there was one.  I was very often exhausted and fluish, vaguely achy, and randomly confused.  I had fibromyalgia, and I didn’t even know it.

Not that it would have mattered back then, what with the attitudes that we are just beginning to get away from.  Yet there is a part of me that wonders what would have happened had I known and been able to take advantage of all I have learned so far.  Would I have survived, excluding the financial issues?  Would I have a degree?

It’s not always a great idea to play in the past, but in this case I think it may help someone else, even if they aren’t as affected as I am/was. 
So, if I could go back and go to college with fibromyalgia instead of against it, here’s what I would do.

1.  I would find the medication that works best for me and use it every day to ensure the best sleep I could possibly get.  All of my symptoms are worse when the quality, not quantity, of my sleep is poor – especially the fog.

2. I would be sure to eat steadily and well throughout the day so as not to spike or lower my blood sugar, which also sends me into flares.  That means no skipping meals.  No poor college student stuff.  No ramen for lunch.  Yes, it’s that important.

3.  Proactive pain management.  I don’t think I’d survive college on some of the medications that I have tried. What works best for me now is simply being proactive – warding off pain before it even starts.  No, I’m not psychic and yes I still always have pain, but I do know my limits and what works for my body and what doesn’t. I know I need to rest often, something I never did in college.  I also have to limit my activities and mental output, something I surely never did in college.  I also need a good physical therapist/ massage therapist who understands that I will be with them for life because my condition is chronic – they need to know that they cannot fix me but that they can make my life more bearable.  Basically, less is more and I always have to think about how things will affect me an hour or a day later.  I have to work within my limits.

4.  Flare management.  Once the pain hits there is one rule – rest.  And keep my spirits high with music, funny stories/movies, and good conversations with good people.  Accept help. Rest.  Also, accept any hot tubs.

5.  I would talk with all of my professors.  I would hand them information on my condition from wikipedia or mayo clinic.  I would tell them that they never need to fear me making too many excuses for myself because the worst thing I do is make zero excuses for myself.  I push to hard and crash over and over and over again.  I’d ask them to help me recognise the signs that I am nearning exhaustion.  I’d make plans and rules for when I’m flaring or sick for makeup work and missing tests or exams. I’d have to find a way to explain to them the idea and experience of fibro fog…

So what does this all mean?  What exactly would my reimagined college experience look like? 

I would lower my class load to the bare minimum needed to be qualified as a full time student and, if it became too much, I would consider part time status. 

I would never take an early morning class and always schedule rest time in between each if not every other class.

I would not work. 

I would go to physical therapy twice a week and be as consistent with my diet as I possibly could.

Bedtime would be my religion, and my social activities would be a bit limited, but my friends would learn that I need to stay in a bit more than out. 

Lastly, I’d nurture my flares instead of fighting them and I would never ever feel guilty about it.  I would rest, rest, rest until I felt better.  It might be a day, a week, or a month.  But that’s the way it is.

Seems drasctic for an 18 year old, doesn’t it?  We are supposed to be full of life and potential, doing all the things, experiencing everything.  No one tells you what to do if you aren’t so healthy, though. This is the only way I could see myself surviving 4 years.  The other way, the way I did it before, the way that works for everyone else? I barely survived a year that way.  I’d take 4 years over 1 any time.

And that’s what I would do if I could go back.

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Author:

Singer/songwriter and blogger/writer from Milwaukee, WI. Advocate for Fibromyalgia/Chronic Pain/Invisible Illness Awareness and Pure Ridiculousness. Possibly poops glitter. Definitely snorts when laughing. Has kept a child alive for 9 years and a house plant alive for 9 days. #chronicallyawesome

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